1 month ago today...

I know I haven’t posted anything in ages but I am going to try and start blogging regularly again. As probably most of you know, I have been wanting to have my leg amputated for the last 18 months or so. This is because for the last 2 years I had been suffering with severe ulceration on my CRPS foot which has meant I had to have in a plaster cast and dressed under general anaesthetics, sometimes as regularly as once a week. I had CRPS for 4 years but it wasn’t until August 2014 when it became much more than just the excruciating pain. My skin broke down into deep ulcers and despite skin grafts and many other operations (53 to be precise) and nothing would keep my foot healed.

On the 18^th July 2016, I had my leg amputated below the knee and today is exactly 1 month since my operation. It’s crazy to think about all the things that have happened in that month.

I don’t think I will ever forget the day of my amputation. When it finally came around I was so excited, I actually couldn’t wait to get to the hospital and at this point I wasn’t at all nervous. I just couldn’t wait, after such a long build-up to the operation I was so happy that there was an end in sight. When we arrived at the hospital it was around 12 noon. Mum, Dan and I were taken to my room and I was admitted. Both the surgeon and the anaesthetist came to see me and explained all their plans and once they had left was when the countdown to the operation began. It was an extremely long 5 hours of waiting and because my leg was infected I had to go last. It was so long in fact I think I fell asleep around 3pm because I was so excited I woke up at 5am that morning. Before I fell asleep, we did some Lego, watched some TV and just generally talked about how excited that it was going to be over and done with. I wasn’t nervous at all until at 5:30pm the nurses came and told me it was time to go. I got on the theatre trolley and went down the corridor and down in the lift to the operating theatres, during this time I was starting to worry about what might happen. I was taken straight into the anaesthetic room and the nurses were trying to make general chit chat but I can’t say it really took my mind off it that much. I can’t have been in the anaesthetic room more than 5 minutes before they told me that they were going to start the anaesthetic, I remember a few seconds of panic and then nothing…

…When I woke up, the first time I looked at the clock I think it was about 9pm. I was so relieved it was over and my leg was gone. The following day, the recovery nurse came to see me and said, ‘Do you know the first thing you said when you woke up was?’ and I replied no. She told me, ‘You asked me if it was gone?’ I think that pretty much sums up how I felt about the whole thing really. I spent that night in intensive care to make sure that everything was ok and then I was moved back to my room the following morning. I spent 6 nights in hospital, I had an epidural after the amputation for 4 days and that was then taken out but after that the pain was so much less than I had before from the CRPS. I had intensive physiotherapy with a lovely lady called Jenni, trying to relearn my balance, being able to get out of bed, going up and downstairs and being able to get up off the floor.

The first week at home was difficult, getting used to doing more and more things for myself, having to tackle the stairs and things but I spent a lot of the time making more Lego models, including a VW campervan which looks amazing but too mum and I about 3 full days. 11 days after my operation I got my stump shrinker and since then but stump has lost 3cm in circumference.

I started having regular physiotherapy and just 16 days after my operation, I started walking on a PPAM aid (inflatable and metal pre-prosthetic leg). It felt amazing to be upright walking for the first time in 2 years. It was the simple things that surprised me the most at first, immediately after I was able to put a duvet over both my legs, I was able to shower my leg, able to sleep the whole night through without waking up and most importantly I am PAIN FREE!

Just over 2 weeks after the operation, I was able to get back on a handcycle and cycle about 8km. It felt so good to be going so quick again. 3 weeks after, I was able to get in the swimming pool and start swimming again, something I had been unable to do because of my condition for the last 4 years (since I was 15). I had always loved swimming and not being able to go was so frustrating but when I first sat on the side with my legs dangling in the water it just stopped any phantom tingling that I used to get. I've been going to the gym and in the next couple of weeks I hope to be getting back in my racing wheelchair too.

I have also managed to reduce quite a lot of the medication that I was taking which has helped me overall, I am a lot less tired and more with it.

This Monday (22^nd August), I am going to the prosthetic limb centre and I will be casted for my new prosthetic leg which I should get about 3 weeks later.

I know amputation is not appropriate for most people with CRPS for one reason or another but I think it should be a treatment that could be paid for by the NHS in the right circumstances. My amputation has been amazing and completely got rid of my pain, I am now pain free. I also know a couple of others it has worked for. The problem is no one can tell you whether it will work for you before the operation and it is a gamble. I also know some people who have had CRPS and had amputation who still have the same CRPS pain or some pain.

So much has happened in the last month and to tell you every single thing, I would be going on forever so I have tried to make it as concise as possible. I am annoyed that the NHS refused to pay for my amputation because they deemed it ‘not essential’ but for me, it was essential and it was the only option I had. All I kept being told was that it might not cure the pain, which I was aware was a risk anyway but for me it was a risk worth taking and it has really paid off. I have freedom, I am pain free, ulcer free, infection free, my stump has totally healed and I will be able to walk again. I cannot thank the surgeon who did my amputation enough, without him I would still be trapped in the horrendous cycle I was in. He has given me my life back and I am now able to do whatever I like.

Why I'm having my leg amputated.

I know it's hard for some people to understand why anyone would want part of their limb to be removed from their body. But I want to try and explain why I've made the decision I have and why I have been to see an orthopaedic surgeon who will be able to amputate my leg below the knee. When I tell people that I want to have part of my lower leg amputated, they're automatic reaction is: "Oh no! You don't want that!" But I say, I really do. There are lots of reasons why I want to have an amputation and I'm going to try and explain just some of them, in the hope people will understand a bit more about my reasoning.

The biggest reason I want to have an amputation is my quality of life. At the minute my condition rules my life and I am unable to do a lot of the things a 19 year old girl wants to do. My life is ruled by doctors and hospitals and every week I have to take the long journey to London to have the cast (on my CRPS leg that covers the ulcers) removed under general anaesthetic and another put on. After trying lots and lots of different ways I might be able to tolerate a dressing the only way was under general anaesthetic, this is absolutely draining. Believe me if there was another way I would love not to have anaesthetics, apart from anything else it completely freaks me out not to mention the negative affects on my overall health. Going weekly is absolutely exhausting, just as I recover from the previous anaesthetic I have to face having it done all over again, it destroys me. If I had an amputation, all of this would stop, and as a consequence my overall health would improve significantly and I wouldn't have to spend a lot of life in bed and lacking energy. 

Another reason I want part of my lower leg amputated is mobility. At the moment my mobility is poor, I rely on crutches constantly but because of the pain, lack of energy and tiredness for the anaesthetics and my medication I am only able to hop very short distances before becoming too tired. The majority of the time I rely on my wheelchair because I am able to go further distances and not get as worn out. Sometimes I feel really old because my wheelchair is not comfortable and not really one made for a young woman. With amputation, there is the potential that I could be able to walk with a prosthetic leg which would be really exciting. There is also the potential that the pain might return, but if that is the case then I would still benefit because the part of my leg that does not function will have been removed meaning it wont be heavy to carry around and it wouldn't get in the way when I try and do things. The outcome is unpredictable and I am aware of that but sometimes you have to take risks and do what you believe is right. 

For me, the ulceration on my foot/ankle is one of the biggest reasons I am going to have my leg amputated. Since August 2014, my foot has had an open wound on it in one place or another. I've had skin grafts and skin flap surgery to try and heal my foot but all attempts have either failed initially or just reopened again. At times, the ulcers have been as deep as the bones in my foot and almost the entire length of the top of my foot. There is the constant threat of infection at any time and my body is always fighting bacteria that get in the wound. The CRPS means that the dressing can ONLY be changed under general anaesthetic which damages the rest of my body and limits what I can do for ages afterwards. My leg has been in a cast for about 18 months and so has almost entirely wasted away and so I am unable to move any part of my foot or ankle. 

Last but not least, pain. Pain is not one of the reasons I am having my leg amputated but obviously, it is a contributing factor. CRPS pain is like nothing else, it is worse than any pain most 'normal' people have ever experienced, but you feel it all day, every day and it never stops. Some people believe having an amputation will solve the pain, but the chances of being 'pain free' even after amputation are slim and this is because the nervous system is so complex. The risks of having an amputation are that the CRPS simply moves further up the limb to the stump and the chance of phantom limb pain is pretty high. It is a risk but for me, it is a risk worth taking. Not only do I have the nerve pain, but I also have the 'normal pain' anyone with a big ulcer on their foot would have and amputation will get rid of this pain once everything has healed.

I hope by reading this, you'll realise just some of the reasons why I am going to have my leg amputated. To be honest, to list all the reasons I would be going on and on forever so I thought I'd make this as concise as possible. By no means is this the 'easy option' and it is not right for most people with CRPS, but it is for me. After having my amputation, I am hoping to be able to walk again with a prosthetic leg. For me, this is a big 'ultimate' goal but something I will do my best to make sure it happens.

I have a long, hard journey ahead of me but I also have renewed hope. 

Cheers to the future! 

Does everything happen for a reason?

The past few weeks has been full of highs and lows for me. The horrendous experience of having the cast removed, to then the fact my foot had as good as healed after all this time, to the day I saw blood starting to seep through the dressing. People say everything happens for a reason but this has made me question this. Having CRPS is horrible, and especially at first you feel it's stolen who you used to be. But having ulceration on the limb you also have CRPS in just makes everything worse. When I woke up from the doctor taking off the plaster cast and leaving it open with a sticky dressing on top, it really was the worse pain I've ever experienced. I was a total mess, all I could do was scream and cry. My memory about some of the details is pretty vague because all I really remember is PAIN. But eventually when they took of the ridiculous sticky dressing and loosely covered my whole foot with dressing to prevent the air against it, it got much better than it was. When I went home that evening, I was upset about what had happened but I was also happy and optimistic. I was happy because again I thought it was all over and optimistic because we'd talked about trailing spinal cord stimulation (SCS). I felt like we were making progress. Although I had dressings still covering my foot I felt like they could potentially come off if the scs worked. I went a few days in increased pain than when my leg was in a cast but I thought with time, it could improve. The trouble is because all the muscle in my leg had wasted I am unable to lift or move my foot at all, in the cast. My foot was at a right angle to stop the graft from moving because it was very fragile.

Well when they removed the dressing that the blood had seeped through, they said the skin had broken down again, which was really hard to deal with because I thought I was getting better. I had the dressing changed but some weeks later the dressing started to smell horrendous, like rotting flesh. I was afraid to go anywhere because of what people might think about me. When this dressing was removed the ulcer had just got worse, it had got bigger and so deep that the bones in my foot were exposed. After this was changed, the pain was so bad I had to stay in hospital for nearly 2 weeks taking ketamine as this was the only thing that made the unbearable slightly more bearable. I wanted to do everything I could to make things better and they were just getting uncontrollably worse. Whilst I was in hospital I had that dressing changed again after 10 days, which went slightly better because my leg was in a backslab cast which was more comfortable than it being unsupported. Whilst I was in hospital I made friends with someone else who suffers from invisible illnesses and is passionate, like me, about raising awareness of invisible disabilities. They also helped me a lot when I was in pain, by chatting and just being there for me, so a massive thank you. 

Today, I am on my way to London to have the dressing changed under anaesthetic again. I've only just realised that today is exactly 52 weeks since my leg has been in plaster and I have not seen my own foot since, which is a weird feeling. I really hope that I start to get some good luck soon and professionals start to listen to my point of view for a change. All of this experience makes me wonder if things really do happy for a reason, I just hope they do and what's meant to be will be. At the end of the day "what doesn't kill you makes you stronger!". 

I'm hoping to get back to blogging more regularly, it's just I've had a lot of things going on recently. 

Keep going everyone. Remember, true strength comes from within...