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...