Finally Listened, I Have A Blog!

After several years of a lot of people nagging me to write an online blog, I have decided that 2017 is the year to listen to people, stop putting it off and get it done! I’m not yet 100% sure what exactly I will all write about, nor what exactly I want to achieve from it – but I’m sure I’ll figure it out along the way. Everything is a journey, right?! What I do hope to get out of it is to lend a helping hand to people who may have found themselves in similar situations I have found myself in, but more importantly how I have got through it and come out the other side.

I will apologise in advance to any of my old English teachers (who probably wont be reading this). English has never been my fortay so to any crazy grammar police out there – sorry! Just go with me!

So who am I and why have people been nagging me to do this? I am Hope Gordon, I am 22 years old and from Rogart in Sutherland in the North of Scotland. I moved to Stirling when I was 16 and lived, studied and trained there for 5 years before moving to Edinburgh in September 2016 where I am in 3rd year studying Sport and Exercise Science at Napier University. All sounds fairly standard right? Wrong.

In January 2008 I went to school as your average 12 year old kid, what I didn’t realise was that that would be the last day I would walk for nearly 9 years. I was playing football in PE when my left knee got sore, I didn’t think anything off it because I have had pain in my left knee since I was about 4 years old, which were always put down to growing pains. My teacher just told me to sit at the sidelines until the pain eased and then I could join back in, once again this was quite a standard procedure. I didn’t fall, or get tackled or anything so I didn’t think it could be that bad. Turns out I was wrong. The pain got worse and worse throughout the day, I really struggled to bend my knee and put weight through my leg, so I just limped around school for the rest of the day. After school I got a lift to swimming training with a friend, in the pool that night I couldn’t kick my leg at all, I just paddled around using my arms. My mum picked me up after swimming to take me to pipe band practise (yip I was a busy kid!), when she seen me hobbling to the car I was greeted with ‘What on earth have you done?’ but the answer was simple, I hadn’t done anything!!

For the next couple of days I was still pretty oblivious to what was wrong, why I couldn’t walk, or how potentially serious it was. I just thought that my ‘growing pains’ were a bit worse and it would settle down within a couple of days – how wrong could I be?! Mum took me to the doctors, we left still not very sure what was wrong but not too concerned, and went up to physiotherapy where I was given a crutch (just one to begin with) at least that made it a bit easier to get around. I was also told to not do any sport or activities for a week, I think I was more annoyed about that than having to use a crutch!

In the next few weeks the pain in my knee increased by the day, bending it seemed pretty impossible and my skin began to get painful to touch, my knee started changing colours and I started to not sleep well at night because the pain kept me awake. I still don’t remember being all that worried, it was just a sore knee after all!

Several months later with nothing improving I seen an orthopaedic surgeon, he had a look at my leg, I had an x-ray and then I remember his words clearly.

“We’ll take you into hospital, you’ll go to theatre on the Monday morning, you’ll stay in for a week getting intensive physio and then you’ll come out running”. Running I thought? That’s even better than walking! I was a kid, he was a specialist doctor so of course I listened to him and believed what he was saying. I was due to go to Canada that summer to perform in the Calgary Stampede with the pipe band I used to be play with, so we arranged for me to go straight into hospital when I got back.

I remember arriving at Raigmore hospital for that first treatment and having absolutely no idea what was ahead of me. I had always been an extremely healthy kid (apart from having ‘growing pains’), it was very rare for me to be at the doctors and I never really missed school from any sickness, so going into hospital was a very foreign experience. I woke up in recovery crying with the pain, but I kept being told I shouldn’t be in any pain due to the drugs – but I was. I’m not actually 100% sure what all the doctors did during that procedure, I had lots of drugs injected into me at the front and back of my hip and knee, and the doctors also manipulated my leg into the position it should be in.

For the next week I had several physio sessions a day, and any time I wasn’t at physio I had to be sitting on my bed with my leg in what I can only describe as an absolutely horrible contraption! It was a machine that my leg was strapped into and it slowly bent my leg up to 90degrees and then back down again. It was absolute agony. They even wanted me to sleep with the machine on which was impossible due to the pain, so not much sleep was had that week! I remember sitting on my bed at the end of the week when my doctor came to see me, my mum or dad weren’t around at this time. My doctor told me that he was referring me to a specialist childrens hospital because they didn’t know what was wrong or how to treat me. When he left I just started crying. It was then that I realised this wasn’t just a ‘sore knee’, nor was it ‘growing pains’, it was something that a specialist doctor didn’t know, or couldn’t treat, and something I had to go to a specialist hospital that was 200 miles from my home. What on earth was wrong?! The bottom line to that first hospital stay was I arrived using one crutch, and left barely able to walk on two. It wasn’t very successful.

A few months later I arrived at Yorkhill Childrens Hospital in Glasgow for my first appointment with Dr Currie – paediatric chronic pain specialist - he quickly diagnosed me with Reflex Sympathetic Dystrophy (RSD), which is now formally know as Complex Regional Pain Syndrome (CRPS). I was told to come back to Glasgow a few weeks later where I would have treatment as an inpatient. I left that appointment slightly confused, but positive.

I finally had a name from what was wrong with my leg, I had never heard of it, and had no idea what it was, but someone finally knew what was wrong with me! The joy of finding out I had RSD/CRPS lasted about as long as the journey back home from Glasgow to Rogart, when we did what everyone always tells you not to do and ‘googled it’. The stories and information presented to us on google certainly wasn’t something to be happy about.

Living in the middle of nowhere meant that the internet connection is something to be desired (I remember dial up far better than most people my age, and it wasn’t my friend!) so I used to go to the library in school at break time and read up on my newly diagnosed condition. In hindsight this wasn’t a good idea, but I just wanted to try and understand it better. I remember crying my eyes out in the toilet one time because I read a story about a woman who had RSD which had spread to all her limbs, and some of her internal organs, she hadn’t left her house in over 2 years and couldn’t even pick up her TV remote. This story hit me hard. Reality hit that this defiantly wasn’t just a sore leg, it was a serious condition that could have debilitating effects lasting a lifetime. I was 12 years old and reading this made me realise that I didn’t know what was wrong with me, but I was going to do my absolute best to not let this condition win over my life.

I’m not going to go into detail about every treatment or hospital stay I’ve had since my diagnosis as that would take forever, I might do so in another post, but for now I’ll keep it short. I spent a lot of time in Ward 3A in Yorkhill Childrens hospital. It quickly became my second home and the nurses became like family. To try and minimize time of school we used to try and make the majority of my impatient stays during school holidays, so my friends would finish school, go away on holiday to have fun, and I would head to hospital. Unfortunately, my treatments weren’t very successful and a lot of the things doctors tried actually made my leg worse. It was hard to stay positive after spending weeks or sometimes months on end stuck in hospital working my hardest doing physio several times a day, just to then go home physically worse and in more pain than when I arrived at Yorkhill. Every time I would think the pain couldn’t get any worse, it always did.

After lots of failed treatments, I began to think that my life would be better of without my leg, I was 14 years old. I knew that amputation and CRPS aren’t things that doctors want to hear spoken about together, I knew that amputation is against the guidelines for the condition, but I also knew I wasn’t getting anywhere with how treatments were going, and I just wanted to get on with my life. For the next two years I soldiered on, spending more and more time in hospital, getting treatment after treatment and still nothing helping. If there were any positive outcomes it was always very very short-term and then my leg would relapse to worse than what it was before.

On the 5th May 2011 I finally plucked up the courage to ask the doctors to consider amputation. These were the hardest words I have ever had to say. I still have a very clear picture in my head of when I asked, it was as if the whole thing was in slow motion. Luckily, for that appointment I didn’t have my usual doctor, which made it a fraction easier because if it was Dr Currie who I’d got to know very well over the previous years, I’m not sure I would have been able to find the words.

There were two main reasons why I found asking the Drs to consider amputation so difficult. The first one was I was worried that they would think this was my idea of giving up, I thought that maybe they would think I had given up on believing my leg was ever going to get better, that I didn’t want to go through any more treatments or continue with physio. The other reason was I knew that the majority of doctors are very against the idea, including my doctor. How was a 16 year old in a children’s hospital supposed to convince a team of specialists that actually I knew my body better than they did, and that they aren’t always right? Of course my reasons for wanting an amputation weren’t because I had given up, they were the complete opposite. I wanted to get on with my life and live a life that even vaguely resembled a teenager, instead of spending most of my time in hospital not getting any better! But at the same time of course I wanted my leg to get better so I continued with the treatments and hospital stays, whilst being told to ‘just forget’ about the idea of an amputation.

On the 2nd August 2016 I finally had my amputation. I had to fight for it more than I ever thought I would need to fight, and more than I think I ever should of needed to fight for it. Even with some medical professionals on my side I had to find my own surgeon who would amputate - once again something I don't think I ever should have had to do. There will be lots more on this in a future post, but the bottom line is that its done and life is great! Just a few of the things I have been able to do since my amputation include; ditching my wheelchair and learning how to walk again for the first time in 9 years, getting back on my horse, stopping all my medication - going from about 60 tablets day to 0. I have been rock climbing, played football, learnt how to cycle, been to Dubai to cycle 92km for charity (actually cycled 99.2km, why didn't someone make me do another .8?!) I have also been able to raise quite a bit of much needed awareness for CRPS.

The 1917 day journey from the 5th May 2011 to the 2nd August 2016, was the longest, hardest, most frustrating time ever. They say good things come to those who wait, that has certainly been the case with me. Since the 2nd August life has never been better! Everyone still comments on how much happier I look, I have always tried to be positive and smile through the whole leg situation but for a long time it was a fake smile, now it is very real and I couldn’t be happier! More to follow soon . . . !

#CRPS #RSD #ChronicPain #Amputation #Awareness