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.

CRPS Diagnosis and Acceptance

LWhen first getting diagnosed with CRPS many thoughts may go through your mind. Primarily for me this was 'what does that mean?'. Then thoughts may turn to the future and if this will ever get better or go away. I know when I was first diagnosed, I was told 'don't worry we can sort it out' but 3 years on I now know that that's pretty much a lie. CRPS is very hard to treat effectively, but if you are diagnosed in the first 3 months there is a higher chance of remission. But there are no guarantees. When you first get a diagnosis, you often wonder what it means fro your future and the truth is CRPS affects everybody differently and so no body can really tell you.

Acceptance is a massive part after you are told you have CRPS, it is a process that takes time. I don't think I have fully accepted what has happened yet but I think I am a lot closer than I was earlier this year. There are 5 stages to acceptance:

1. Denial - the first stage is denial. This means that you are denying that your life has changed/been affected but CRPS. A common thought I had was 'I can still carry on despite my condition'. There is no set amount of time that you could be in denial, it varies from person to person. As long as you allow yourself to have thoughts and feelings you will always deny your condition. 

2. Anger - the second stage is anger. You will feel angry, maybe towards yourself, family, friends or maybe the doctor who diagnosed you. You may try and find someone to blame or wonder why this has happened to you. This stage is very common and a normal part of acceptance but it is also important not to stay in this stage for too long because this can cause stress, depression, bitterness or isolation. You may find that you snap mat people when you don't mean it and when you normally wouldn't. I found this stage hard because I would get anger with my family and lose my temper when I never used to be like that before. 

3. Bargaining - the third stage is bargaining. This is where you may make a deal or trade with your elf or 'God' that if you do something good the your CRPS will go into remission or your pain reduced. This is you trying to find a way back to your old life before you were diagnosed with CRPS. None of these thoughts will ever materialise as there is currently no cure for CRPS.

4. Depression - the fourth stage is depression. At this point in the acceptance process you have realised your CRPS will not go away. You have chronic pain/ CRPS for the rest of your life, during this time symptoms may vary greatly but it will always be there. People tend to stay in this stage the longest because it is the most difficult to get through. You may experience feelings of sadness, loss, desperation, anxiety, isolation or vulnerability. People in this stage tend to withdraw as they see no point in doing things, living, seeing or talking to friends, family or loved ones. No joy or love of life can be found for people going through this stage and no way out can be found, it will seem to last forever but you will get through it. Depression totally consumes you and your life, it may seem like you can talk to no one but if you slip deeper and deeper into depression or experience suicidal thoughts or intentions that you seek medical attention right away. It is not uncommon for people with CRPS to experience these feelings in fact many sufferers do. When you are diagnosed with CRPS and you enter this depression stage you are often grieving for the loss of your 'old life' and the loss of all the things you used to enjoy. You may feel tearful and cry and sometimes not even know why, I know I did but this is all part of the acceptance process. You have to appreciate that you are bound to have bad days as well as good ones because it is not easy. To get through this process it takes a bit of time and patience for you. At around this time it helps to talk to other CRPS sufferers on Facebook groups. I found the 'CRPS UK- living with pain' group, that is run by CRPS UK for sufferers, a life saver, it was so brilliant to talk to so many amazing people with experience and it is a brilliant to post your problems and worries privately and get advice from other people. 

5. Acceptance! - the final stage of the process is acceptance. It is at this point that you begin to realise that you have a limit to what you are able to do now in your 'new life'. The aim of this is to find acceptance of your CRPS. You have now found that you have accepted your CRPS into your life and it is a part of you that will remain th you for the rest of your life. It does not mean your life is over and that you have to give everything upon give up looking for different treatments or a cure because of the chronic pain but you have realised the reality of it. Your new life, since your CRPS, will be different and the way you do things will be different to how you used to but this is ok, and all part of the process. You will begin to heal emotionally an mentally once you understood that that this is your new path yah at you will follow. By incorporating your CRPS into the things that you do will help you heal and start to take control of your life instead or your condition continuing to take it over. 

I found acceptance an incredibly hard process and it took me to some very dark days, but I got through it. I would say now, 3 years since my CRPS was trigger, I am close to accepting what has happening to me and how it is likely to affect me in the future. I'm not there yet, I still have some things to accept but I will get there, and so will you.

Never give up on hope!!!!!!