Our first blog about Simon’s preparations for the London Marathon in April 2019 is from his wife Jan, pictured with Simon above, who explains why she’s backing him to raise money for Carers Support.
I feel exposed right now as I hide my life, health and how I am feeling as much as possible. I am an incredibly private person who hides everything behind a smile. I have written this because Simon is going to get publicity about his fundraising and his reason for doing the marathon, so I cannot hide away anymore, as he is also raising awareness for Ehlers Danlos Syndrome (EDS).
I have spent so many years trying to find out exactly what is medically wrong with me and get some answers that made sense.
EDS is a rare genetic condition which affects the connective tissue, my body has faulty collagen and collagen acts like a glue throughout the whole body to hold it together. This is why I could get my body into strange positions due to the flexibility of my body. I loved sport but struggled with my knees and hip – from a young age I had an osteopath put my hip back into place as it popped out of its socket but I thought this was normal!
I was bullied at school for being so skinny. I have a very slow digestive system which causes many symptoms, one of which is that I find it very hard to gain weight. So many things make sense now, too many to explain and things that I thought were normal are not, it is EDS!
Being told about EDS was a lot to take in and learn about let alone accept and adapt to live with. I feel I am one of the lucky people with EDS because what it can do is horrendous and fatal for those with the rarer types. There are very limited specialists in this country and local knowledge medically is virtually non-existent.
In 2015 I had the most frightening test done as I have low blood pressure and a high heart rate. The test confirmed that I have Postural Orthostatic Tachycardia Syndrome (POTS) which many people with EDS have. Well it does explain a lot – I am prone to fainting and get carted off to hospital due to abnormal ECG readings. I have been taught how to manage the condition and I don’t kiss the floor as much as I used to but, unfortunately, due to my family history when I cannot get my blood pressure up and my heart rate down, I have been told I must get my heart checked out.
I spend every day in pain. I am never pain free, some of my joints including the cartilages of my ribs randomly pop out of position, my muscles go into extreme spasms, which is excruciating. I have chronic fatigue, body tremors – the list is endless.
I live each day hiding how I am feeling and if asked how I am my normal response is ‘I’m OK’ or ‘Not too bad, thank you’ and that’s it. However, it isn’t so easy to hide how I am with Simon. He has been by my side all of the way. He only needs to look at me or listen to my voice and he has a very good idea of how I am. He does make me laugh – when he knows I am really bad he asks, ‘Is it a hospital job?’
I will not be beaten, I hide behind a smile, laugh as much as I can and always look for the funny side. I get incredibly frustrated with it all as I want to be me again as I am rapidly losing my independence. But that is not going to happen, so I must accept it’s OK not to be OK. I ignore it all as much as I can but when I receive yet another hospital report I get an unwanted reality check.
One thing for sure is that every time my health or life in general chucks me another blow and knocks me down, I will get back up, I will not have my smile, laughter and strength taken away.
Thank you for taking the time to read this. Please try not to judge a book by its cover: there are so many invisible illnesses and not just illnesses – everyone in life fights battles of all kinds that you cannot see from the outside. No one knows what is around the corner and life can be turned upside down in a flash and, sadly, for many it can be taken away all together.
I do not want sympathy – understanding would be nice, but I do appreciate my health is incredibly complicated so it’s not easy to understand.
Lastly, I think Simon is a flipping nutter for doing the marathon but understand his reasons. He is so dedicated to this and he will achieve his goal. His little legs move quite fast when they want to! He is also my rock, my soul mate and I am so very proud of him. Simon, I love you so very much and thank you for being you. xxx
You can support Simon. Visit https://bit.ly/2C8m6Le