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.

The Troubles of Being Young and Disabled

I've been trying to think what I should write about next, that's when Dan had a good idea. What it is like to be young and have a disability. Since my CRPS got worse and I started to develop ulcers, my mobility has also got worse, meaning I am unable to put pressure through my right leg which has been the case for the last 6 months. At first it was hard to try and adapt, and it still is but I feel like I'm getting there, my balance is incredible now. I consider myself lucky, I had saved some money and I managed to buy an automatic car which my parents paid to have adapted for me. I don't know where I would be without my car (Ralph) now, after 3 months of not being able to drive my old car, it gave me some freedom back. All of my friends and family were really supportive in me trying to live with my disability and accepting my limitations, however, society can be very cruel to young disabled people. Don't get me wrong some of the general public are very nice but others can be very rude and spiteful for no obvious reason. So I thought I'd share some of my mine and Dan's experiences to make you realise you are not alone:

1. Disabled bays: 

There's a clue I the name really they are for disabled people who hold a blue badge irrespective of their age. I know for sure I have had some terrible experiences of disabled bays within the last 6 months so I'm sure many other people have as well.

I was going to the supermarket one day and so I went to park in the disabled bays because I have a blue badge. Before I even started to get out of my car an old man was stood there shaking his fist at me. Normally I use my chair when I go into the supermarket but this time I only needed a couple of things so I used my crutches. I started to get out of the car and the man starts shouting about 'how I should move my car because these spaces are only for disabled people.' I ignored him at the time until he said 'look at you' and that I was faking my disability, I turned round and said 'so then why are you parked here, you are old not disabled.' After that I heard him mumbling but I ignored it and just went to get my shopping. I was innocent, all I wanted to do was go to the supermarket. Later on when I thought about it, it made me really frustrated because I just wanted to mind my own business.

When I've parked in disabled bays and got out, I have been 'reminded' several times that I'm parked there. Dan has even had people knock on the window saying 'excuse me this is a disabled space'.  This is pretty common for CRPS sufferers, as primarily it is an invisible disability however right now mine is pretty visible, in fact it's bright pink and people still feel the need to intervene. 

2. 'How can you drive that car?' 

This is a question I hear far too much of. My car is adapted with a left foot accelerator so I can drive it with my left foot, which was hard to adapt to at first but now I couldn't imagine it any other way. Dan's car is adapted with hand controls, so he can accelerate and brake using his hands. It's pretty amazing the kinds of adaptations that you can have put in your car, yet unless it affects you and you are able bodied you've probably never thought about it. 

Not that long ago, I went to put petrol in my car and then went into the kiosk to pay. My leg was in plaster and I was on my crutches and the woman behind the till started asking questions. 'Is that your car' 'are you the driver' 'you're not allowed to drive like that'. I said yes and it is adapted so I can drive it with my left leg. 'Surely that's not legal'. Actually it is perfectly legal. The woman even threatened to report me to the DVLA, if she saw me again. It's so frustrating and tiring having to explain yourself everywhere you go when you just want to get on with your day. 

But just because you have disability doesn't mean you can't drive, there are so many adaptions you can get nearly anyone driving. 

3. Wheelchairs

When Dan and I go out it always takes us a while to get our chairs out the car and to put them back in. I find it frustrating that it takes so long but then we just have to be patient and so do other people. We've had people just staring at us putting our stuff in the car, for no reason just because they are nosey.

The most frustrating thing for us is when we go out in our racing chairs and parents with young children say 'look at that bike' and the little kids correct them saying its a wheelchair. It's like they are afraid to tell them it is a chair. Personally, I'd rather them say it's a wheelchair than send mixed messages to children because there is a difference and being honest doesn't offend us, we are well aware they are wheelchairs and not bikes. 

When the weather in nice Dan and I go training around the quay, we have so many people of all ages just sit and stare at us, we are trying to better ourselves and we get people pointing and staring. I think this is because para sports are massively under-advertised and its probably the first time many people have seen racing chairs or hand bikes but even so it makes me feel like I'm the odd one out when really I'm not everyone is different. 

Over the last 6 months I have had so many negative experiences like these by members of the public. We don't want wrapping in bubble wrap either, we just want to be able to get on with our own lives like any other person would. Obviously these are just the bad experiences, I have had positive experiences as well when people offer to help if they see I am struggling. I wanted to share these stories so young disabled people don't feel isolated and alone like it is just them, it isn't, lots of people have these kind of problems.

Stay strong! :)