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! 

The Invisible Parts of CRPS!

The I'm sorry it's been a while since my last post, been having a bit of a hard time lately. Somehow I got an abscess on my foot right near the ulcer and it became infected which made me feel really unwell. which meant a weeks stay in hospital for me 👎🏻. Still struggling with this but the blog must go on. 

I've had a lot of time to think recently, which is sometimes a good thing and sometimes bad. I thought it. Would be good to blog about the 'invisible' part of CRPS. The bits people don't see, the parts when you feel like falling apart, the struggles we face everyday with a smile on our faces, the mask that hides a thousand tears. People can be extremely quick to judge, just because you may 'look fine' that does not mean a thing. 

PAIN! 💉

The most obvious invisible symptom of CRPS is the pain that we feel relentlessly, 24 hours a day, 7 days a week. Some people don't believe me when I say the pain is constant, it does not go away- but it's true. People describe the pain they feel differently but the common thing is the burning pain that is described, this may be an extremely hot burning sensation or a freezing cold sensation. For me, over time it has changed, when my CRPS was first triggered I felt a burning hot feeling but gradually over time this has changed to an ice burning feeling. They say this is partly because of the effect the nerves have had on the blood vessels and blood supply to my foot, it is now compromised. As well as the burning feeling I was describe my pain as a sharp stabbing pain and a shooting pain that goes from my toes to my thigh. Pain in itself is a symptom that greatly affects the mobility of patients and their ability to carry out 'standard' everyday tasks. You really could never imagine the pain until you have experienced it. After a while, we learn to try and mask our pain. We smile on the outside when it feels like our bodies are in self destruct mode. It is hard to mask the pain but it has to be done to try and progress with life and have some kind of normality back. 

Sensitivity. 😰

Another invisible symptom that is linked to the pain felt by sufferers is sensitivity. This means the even the slightest touch can cause extreme, uncontrollable pain. The sensitivity is a hard thing to conquer, some people manage to use desensitisation techniques to teach themselves to tolerate it but for other sufferers, this just isn't possible. The 'fear' of the affected limb getting touched lead many sufferers to try and guard their affected limb from anything that may touch. Unfortunately I fall into the category of people to try to protect their limb from anything knocking it because the pain is unbelievable. At times I find it hard to enjoy certain things because I am so worried about people knocking my leg. For me the sensitivity doesn't end with only people knocking my leg but for example if the wind blows strongly it's hurts. If it is raining heavily, the rain drops hurt. Vibrations from loud noises hurt. And when the weather turns cold, it causes me increased pain. 

Emotions. 😕

Living in chronic pain also impact on your emotions as it is exhausting trying to hide the pain you are in constantly.  Many people who live with chronic pain or CRPS experience depression at some point, this is often part of acceptance and the realisation that you can no longer do what you were once able to. I also have anxiety and PTSD (Post traumatic stress disorder) in relation to my CRPS and the experiences I've had since my CRPS was triggered. At times it is hard but my boyfriend, family and friends make a big difference to my mood. Since Dan and I have been together my anxiety has improved a lot, I think it's because I feel safe when we go out together and now often I never think of the things I used to worry about when I went out. For people with CRPS it is often recommended you have a multi-disciplinary team including: anaesthetists, pain management consultants, physiotherapists and psychologists to work together on all of the problems having an invisible illness causes. Sometimes people won't see psychologists because they're worried people will think they are mad or crazy but that's not the point. At first I was sceptical but now I realise that they're help is very valuable. For me they've helped me to learn to stay calm during pain flares, helped reduce my PTSD symptoms and anxiety, they've also helped me realise that I'm still the same person I was before and how to accept what I can and cannot do right now. I really think i would be in a lot worse position now if I hadn't accepted they're help. 

With CRPS only occasinally are they visible symptoms such as colour changes to the skin, changes to nails, ulceration, dry or shiny thin skin but even these are hard to spot, you'd have to be looking pretty closely. The problem is many people can be too quick to judge that you may 'look fine' but actually they will never know what we go through every day. So next time you try and judge a book by its cover, just think that not all disabilities are so obvious and you can never guess what's happening on the inside.