When did you first realise that all was not right health wise?
It started when I was a teenager, I was about to start my GCSE PE exam and I went through a couple of periods when I couldn’t move my legs.
My dad would have to help me up on to the sofa and they called out the GP and that went on for about a week.
I was playing tennis then and it regressed up until college and the relapses began to get more frequent but they were ‘only’ 5-6 times a year.
In 2004 I was diagnosed as being diabetic but in 2010, when I was lady captain, I became really poorly during a medal and it has gone downhill since then.
Why did you not know straightaway that it was muscular dystrophy?
There are so many other muscle conditions. They said when I first went into Kings (hospital) it would take five years to get to a diagnosis and we are two and a half years in.
I went from somebody who was going to the gym every day and playing golf five times a week to someone who can’t do any of those things. I have just started hitting balls again.
This year I have had four relapses. It is caused by the muscles breaking down and it leaks creatine kinase (CK), which is an enzyme, into the blood. That then cannot come out of the body as it floods the kidneys and they can’t then clear it and you can’t pass urine.
My legs and arms swell to twice the size and you have a fever and are very disorientated.
How did you cope with being lady captain?
In June or July I was playing a medal with my vice-captain and it wasn’t a particularly warm day but I had the usual Lucozade and Mars bars in the bag.
By the 3rd hole I really didn’t feel well, by the 8th I had been sick a few times. We got to the 9th tee and my partner said let’s go in but she was playing quite well.
I then collapsed on the 10th green. I went to the hospital and they did some tests and my CK levels were well over 3000. They knew there was some sort of trauma occurring in the muscles which was good as I knew that something could finally be done about it.
By the 3rd hole I really didn’t feel well, by the 8th I had been sick a few times. We got to the 9th tee and my partner said let’s go in… I then collapsed on the 10th green. How does it manifest itself in your body?
From the hips down to my toes my legs go to two and a half times the normal size so the pain is terrible. The steroids do work if you take them at the right time.
I always tell myself is that this has taken my golf away from me and golf is such a huge part of my life. I was doing a lot of swimming every morning but they told me to stop that, I am hoping that my body can settle down and I can do some cycling.
Where do you get your inspiration to keep fighting?
I have not met many people with my exact symptoms but you are on a ward with people with other muscular problems and I find that a massive inspiration. Some of them are 20 years older and they are still battling away. There is always someone worse off than you, particularly on a neuro ward.
What would you say to someone considering playing in the Four Course Classic?
However you play just enjoy it and the money you earn will be so well spent.
Without my doctors I think I would have given up long ago. I am a fairly positive person but when I couldn’t walk, and you could see on the MRI how bad my legs were, and I had had 18 bags of IV and my veins were collapsing I was at the point of giving in.
You could see blood coming out of the cafeter and I just lay there and I had had enough. I was crying and someone had come in to visit and she started crying and she just said she would swap places if I would. And that was my turning point.
Up for the classic?
The Muscular Dystrophy Campaign Four Course Classic 2013 will take place on Friday 21 June, the longest day of the year.
Tee off as soon as the sun rises and then tackle four courses in one day. To reserve your chosen courses all you need to do is pay £25 per golfer and they will then book everything else for you. Any money will be very well spent. www.fourcourseclassic.co.uk