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.

Intro

Hi! My name is Hannah and this is my boyfriend Dan. I was diagnosed with CRPS (Complex Regional Pain Syndrome) almost 3 years ago to the day. It has changed my life beyond recognition. I was an active, motivated, determined person and I had my mind set on only one thing, being a successful chef. All was well for a while and I managed to carry on working and living in London until I started getting ulcers on my affected right foot. The ulcers have changed everything for me, I was no longer able to pretend that everything was alright. I had to stop working in the kitchens which destroyed me as it was my one massive passion. I hope one day I will graduate and be able to return but right now I realise this is not possible. 

I decided to start a blog to help other sufferers, particularly those who are a similar age to myself, my friends and family understand better what life is like when you have CRPS. I understand how isolating and lonely it can be to be diagnosed with CRPS, especially when you are young and all of your friends are busy running around doing things and you're not able to keep up. But people need to realise that it doesn't have to control your life and there is always something you can do and succeed at. You just have to find it. I found this quote and for me it is absolutely perfect: 'Just because the past didn't turn out how you wanted it to, doesn't mean your future can't be better than you ever imagined.' Since I've started wheelchair racing and hand-cycling and since meeting Dan, my outlook has changed a lot. I now feel so happy and content even though I would never have imagined I would be in the position I am now. I am so grateful for all the support I have received in the past few months and it really has changed everything for me. Before this I was really struggling, I felt as though I had let people down or not lived up to expectations, even ones I set for myself but now I feel as though I have a purpose again. Whenever we train, I feel so good afterwards, I feel proud of what I have achieved so far and have big goals for the future. I want to give hope to other sufferers, so people realise that even though they may be really struggling now, it doesn't always have to be like that. Don't let CRPS rule you and destroy your life, try and turn it around into something positive and you might just be surprised, I certainly was! 

Thank you for reading! More to follow soon! xx