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I felt it was time to try and bring some awareness of a disease I knew nothing about until my significant other half (!) was diagnosed with it in August 2016. Psoriatic arthritis is an auto immune inflammatory disease. It can cause swelling, stiffness and pain in and around the joints, cause nail changes and overall fatigue. Studies show that delaying treatment for psoriatic arthritis as little as six months can result in permanent joint damage. Early recognition, diagnosis and treatment of psoriatic arthritis are critical to relieve pain and inflammation and help prevent joint damage. So I am telling Paul’s story in the hope of raising awareness. But also because I wanted to let those around us know exactly what Paul has been going through and how amazing he has been at coping with this and not just coping, but being positive in what is a very uncertain time.
In May I will be doing my first ever triathlon, spurred on by Paul. I have decided I want to do this to raise money for psoriatic arthritis. It would mean the world to us if you could show your support by donating, using the following link. I want to do something where I have to be strong and focused and dedicated, in honour of Paul and all that he has done and will continue to do for the sport of triathlon.
Since Paul’s marathon row attempt in May 2014 things haven’t been quite right with his body. It started with issues with his hip and progressed little by little as he trained for the Ironman attempt in May 2015. There were problems with his ankles and hips and general fatigue, but we put them down to overtraining, niggles. As you would with an Ironman! After the Ironman he never fully recovered. In November 2015 he got an awful rash covering his whole body. It was very aggressive and lasted for 8 weeks. He was given a cream and it was thought it could have been brought on by a virus. At this point in December our little baby girl Emily also got very poorly. She had whooping cough which saw lots of hospital visits, doctor visits and endless nights of no sleep. It was so draining on us all and it took until May 2016 to get finally a diagnosis and treatment for Whooping Cough. In this time, I am sad to say that I missed a lot of what was happening with Paul, my focus was on Emily and being completely exhausted! Something that will never stop eating away at me will be what if I had noticed sooner..... You see Paul was moving more and more like a 70-year-old man. And we all kind of noticed something and laughed about it instead of questioning why. The first signs of how strong and positive Paul truly is. He also experienced extreme fatigue which was not normal, but we put it down to Emily being so disturbed at night, so we didn’t investigate it. Finally, it got to the point in May that Paul couldn’t walk properly. People talk about Paul not being able to run anymore, but it was so much more than that. He couldn’t walk down the stairs carrying his own child normally, or kick a football with his kids or even go on a walk in the woods. He went to see a consultant about his ankles, which were giving him the most pain. The consultant wasn’t happy about what was happening and referred us to a specialist in arthritis as he suspected psoriatic arthritis. She found his body in lots of pain. Ankles, feet, fingers, hip, back, neck....... She agreed it wasn’t normal. Paul went for scans in his hands and feet. But they didn’t show inflammation and his bloods were clear. Paul being Paul and being very proud and determined decided he just wanted to get on at this point! He thought it couldn’t be that bad so he was just going to work through it!! By August it was clear this wasn’t happening! His deterioration was rapid, he moved in such pain and I could see it was affecting everything. He was exhausted so much, and not just a bit tired, beyond tired, complete exhaustion and fatigue. He went to see a friend who is a Orthopaedic consultant about his ankle and hip. He ordered MRI’s and these showed inflammation in many joints, very different to the scans in May. Paul was referred immediately to a specialist in psoriatic arthritis. He confirmed our worst fears. Paul had a very aggressive form of psoriatic arthritis. It was all over his body. They gave him steroid injections and a course of steroids to stop the very quick deterioration of his body. He would then go onto long term medication of methotrexate which would hopefully stop his body from deteriorating further. Nothing though would reverse the awful damage done though to his joints. It was decided he would have a clean-up on his ankles, to hopefully help him move with more ease. It can only be described as shock when the doctor came to see me after his operation. He couldn’t believe how bad his ankles were, he said by rights most people would not even be walking. The operation didn’t do what was hoped. He recovered well, but he is far from ‘better’. His body continues to have bouts of deterioration, more joints get affected, more pain to live with.
As most of you know Paul’s passion is sport. Apart from his family it is the most important thing to him. He has lost the ability to be competitive at a good level, he has lost the ability to be able to run, he has lost the ability to do many sports he loves, he has lost the ability to push his body. I could go on and on. Paul’s job is sport. I can’t imagine how it feels to have to carry on working with people and coaching them and being part of a world that you have been so cruelly pushed out of, to be able to keep finding the drive to carry on doing it. Not only that Paul can’t do many ‘normal’ activities with his children. Day to day life is not always easy, things that shouldn’t even be an issue at 35, or even 70 years old are a problem. The future; we don’t know the answer to that yet. We are still moving through the medication process, working out next steps. The next thing is a hip operation, but will that make Paul ‘better’? No, it will just take away one part of his pain. And I don’t mean to sound negative or morbid, but I want people to know what this disease is, it doesn’t go away, it’s here for life and Paul has tried everything; diets, exercise all those things people come up with! He was a model human! But sadly it’s more than that, many of his joints have been so badly affected that there isn’t anything that will solve that, not even cutting out dairy!!! ;)))
But medication is forever evolving, we are hoping that something radical will happen! We are hoping that ankle replacements become the same as hip replacements and eventually he could be a bionic man!! So although this sounds very negative, we are not negative. Far from it. Paul has been amazing. And I truly mean that. He has a life changing disease, which has stopped him from doing so much. It has affected every part of his life. So many people would have sunk into depression, stopped working, given up exercise. Not Paul. If you chat to him in the street you wouldn’t know there was something wrong. That is a true credit to Paul that he is able to do that. He has stayed strong for us, his family. He has stayed positive and kept finding new ways to do things, new ways to exercise. He keeps getting knocked back as the disease takes another part of his body, but he doesn’t give up. Not once. I can’t find the words to describe how proud I am of him and how lucky I feel to have him as my partner and dad to my children.
So, this is one reason why I am doing my first triathlon in May! I want to help the PA organisation keep investigating new ways to stop this awful disease. Please support us by sponsoring me for this race. I only hope I can do well and make Paul proud of me, even if it’s only a quarter of the proudness I feel for him. xx
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